CCPM Community Spotlight: Leah and Malachi Carroll

The smallest acts of kindness can make an entire day brighter. This was the case with Leah Carroll and her four-year-old son Malachi when a simple hello in Chick-fil-A from another family made the pair’s day. Malachi has Cerebral Palsy, which often means other children aren’t quite sure how to act around him even though Malachi loves making friends. That day in Chick-fil-A, two curious, young boys under the guidance of their mother approached him. After introductions, the three children began communicating happily amongst each other, and Leah was touched to see her son being treated with acceptance, kindness, and respect. She wrote an open letter on Facebook about the encounter, and it resonated with so many people that it became a viral sensation, and the message of kindness and acceptance spread worldwide.

We spoke with Leah to learn more about that interaction and why small moments of understanding can be incredibly meaningful for families impacted by CP.

Children’s Cerebral Palsy Movement: Hello Leah! Thank you for taking the time to answer some of our questions. Could you tell us about your son, Malachi?

Leah Carroll: Malachi Jacob Carroll is four years old and the happiest boy you will ever meet. He loves to make people laugh and music of any kind will always bring a smile to his face. He adores his dad! He loves to ride horses at hippotherapy and spend time around other children. He is auditory driven and enjoys silly sounds and toys that make those sounds. He loves to swim! He also loves to watch Daniel Tiger and Sesame Street.

CCPM:We understand that Malachi has Cerebral Palsy. Could you tell us about your CP story?

Malachi was born very unexpectedly at 24 weeks gestation due to a placental abruption and was only 1 pound 12 ounces. He was born via emergency c-section and without a heartbeat, and it took 15 minutes of CPR to bring him to life. During that time his brain experienced severe damage resulting in grade 4 bilateral (both sides of his brain) bleeds. At 3 days old they sat us down and gave us the option of stopping life-saving care, but we told them as long as he wanted to fight we would choose to fight alongside him. And fight he has! He developed hydrocephalus from the brain bleeds that is controlled with a VP shunt. He also has severe epilepsy and fought infantile spasms at 8 months old. He was diagnosed with mixed cerebral palsy so the core of him is hypotonic while other areas like his hips, knees, and feet are extremely hypertonic. We spent 4 long months in the NICU and he has had 13 surgeries since his birth. But not a day goes by where you won’t see a smile on that boy’s face!

Malachi is non-verbal but is very intelligent. He is learning how to communicate to us in his own special ways, like a frown for “no”, one arm moved for “more”, and a one of a kind happy dance for “yes”. He is immobile and still struggles tremendously with head control but is slowly making progress. He does not have functional use of his legs due to his cerebral palsy and his hips are severely out of socket but he enjoys getting out and about in his wheelchair and doesn’t seem to mind the limitations. He finds joy in everything that he does!

Back in May, you wrote a Facebook post thanking an anonymous mom that you met at Chick-fil-A. Can you tell us the story behind that and what inspired you to write the letter?

LC: When we take Malachi out anywhere we are often treated one of two ways: with pity or completely invisible.

Most times strangers don’t mean to be offensive, but in their attempts to not say the wrong thing they simply pretend that we don’t exist. When I look at Malachi I see a sweet boy with a joyful spirit. My desire is that others see that happiness and joy in him.

As a special needs mom, every day I struggle with the “why” questions…why us, why Malachi. It is so easy for me to fall into a pity party thinking about how difficult our life can be. So when complete strangers choose to take that route, it can be so damaging to my already fragile boundary. Each morning I have to make the conscious decision to look for the blessings in our life and find the positives to focus on.

So when those rare moments do come when we have a positive encounter, like that day at Chick-fil-A, I cling to them!

We had a horrible start to our morning as we had traveled more than an hour to a neurologist appointment and had been forgotten in the waiting room. Because of the delay we were going to be late to our next appointment leaving me frazzled. As we scrambled to the car and got back on the road, I looked in the rearview mirror and noticed that Malachi was moving his mouth telling me he was hungry. He is still fed primarily through bottles and feeding him is not a simple task. As I watched him communicate with me I decided that we just needed to take a break and simply be extremely late to our next appointment. We just happened to be driving by a Chick-fil-A, which sounded great to my 7 weeks pregnant body so we parked and went inside.

As usual, the heads began to turn as I pushed Malachi’s wheelchair up to the line. Feeling all those eyes on me is something I still struggle with, but something I am working on! I never want Malachi to feel that I am embarrassed by any aspect of our lives, so I am working hard to get past that red faced reaction and instead beam with pride over my boy!

The letter I wrote will do a great job at explaining the rest of the story that day. Here it is:

To the mom of three at Chick-Fil-A: I sensed your panic when your five year old son pointed at my son in his wheelchair and shouted “Mom look at THAT boy!” You leaned forward and quietly told him and his three year old brother that we don’t say things like that and they shouldn’t point or stare. But as in most cases, these suggestions are futile with young, curious minds and they continued to stare and loudly ask questions about my son’s differences. When you realized your whispers weren’t working I saw the panic disappear and you took a deep breath and took a step of courage. You brought your boys over to Malachi and said “I bet he would like to know your names!”. As they said their names my little Malachi started grinning from ear to ear and jabbering back to them. The joy on his face brought tears to my eyes- he loves kids his age but so many are fearful to come and speak to him. Your boys continued to ask questions about his foot braces, his wheelchair, why his legs don’t work, why he holds his mouth open like that. You took the time to educate your sons in that moment and help them understand that different is okay. Different is not something to fear. And that it was okay to ask questions! Thank you for giving my son a chance to meet your kids. Thank you for being the type of mom who educates your children instead of frantically trying to silence them. Special needs moms have to develop tough skin- we get used to stares, comments, and whispers. Please know it takes a lot to offend us, particularly when the comments are coming from young children. Give your kids the same grace we give them and use the opportunity to teach them about differences. So Chick-Fil-A mom, thank you for raising your children to embrace children like Malachi. And thank you for giving my son something to smile about.

Several days had gone by before I posted the letter. The more I thought about the encounter the more I realized that the other moms are just unsure of what to do in those situations. I don’t fault them for the comments, as kids are naturally curious. I thought posting the letter on my Facebook page would give my friends who are mothers an opportunity to see the situation from a special needs mom perspective and give them a positive example of how to handle similar situations. I never dreamed it would go beyond the friends on my personal page.

CCPM: Were you surprised when your post attracted the attention that it did? Why do you think it resonated with people?

LC: I remember opening up my Facebook page that same afternoon and I was absolutely shocked at the reaction the post was getting. People kept commenting about how the post made them cry and I re-read it trying to figure out what had captivated them so much. I still haven’t been able to put my finger on it! Within 24 hours it had been picked up by several other Facebook pages and it began to go viral. By the end of the month it had been translated into over 30 different languages (that we know of) and spread worldwide. The response has been overwhelmingly supportive as many parents comment that they never knew what to do in similar situations.

I think the post reminded people that we are all mothers who want the same thing for their children- acceptance and kindness. I believe the post served as a reminder that even though our life is filled with challenges that we didn’t expect, we still have a strong desire to be acknowledged and interacted with as though we are any other typical family. And while Malachi may not be able to verbalize it, he too is lifted up by these moments.

CCPM: Tell us about that day. How were you feeling when you saw the mother’s two sons, Crawford and Lawson, looking over at Malachi?

LC: I have never been offended by the looks of young children. Now adults who stare and older children who should know better can frustrate me, but these young boys were simply seeing something for the first time. I was amused at their questions and very interested in hearing how the mom would respond. When she responded with such grace and brought the boys over it actually caught me off guard! But the moment that touched my soul is that both of the boys looked at Malachi and introduced themselves. Often when kids come to “talk” to Malachi they interact with me, not quite sure how to talk to him. But these two boys talked to him like he understood every word (which we believe he does!) and seeing them look past his differences and see him as simply a four year old boy in a cool chair brought tears to my eyes.

CCPM: And how did you feel after they came over and introduced themselves?

LC: I could not stop tearing up but I couldn’t look away from the tender moment. The boys had gotten close enough to Malachi that he could see them well; he has cortical visual impairment and only sees well with his peripheral vision. Malachi’s smile when he saw their faces was one of kind and watching that encounter without having to push to make it happen overwhelmed me.

CCPM: Even though it was such a simple act of kindness, you’ve said that it meant a lot to you. Could you tell us why?

LC: My desire is to give Malachi the most normal life possible. I want him to experience life to the fullest and get to experience all of the joys and highlights that other kids his age do. Making friends is one of those things I desire for him. The older he gets the more difficult I am finding that task to be, and it breaks my heart sometimes. To see two young children so excited and eager to meet Malachi just touched my soul. It is an encounter I always wished would happen…that Malachi would be able to make friends without me feeling like I was forcing the kids to be kind to him… and seeing it firsthand was a dream come true.
Genuine acts of kindness that aren’t created out of pity are so special to me.

CCPM: As the parent of a child with CP, how do you hope other children treat your child?

LC: I often see fear in the eyes of children when they encounter Malachi. As I try to process why this emotion happens, I can’t help but think it is a byproduct of how adults in our society view people with disabilities. I hope our culture changes in a big way that encourages more GENUINE interactions like ours with these sweet boys. I hope parents will begin to educate their children instead of silencing them as I often witness. I hope that all children are as excited as these boys were to get to know Malachi.

CCPM: If you could share a message with everyone, what is one thing you’d like the world to know about Cerebral Palsy?

LC: Families with warrior kids like my Malachi want you to know that we absolutely love our son, just the way he is. Do we wish things were different and life wasn’t so hard for our children? Absolutely. But this is our reality, and we have accepted that! Instead of focusing on our challenges, as we are daily tempted to focus on, please see our contentment. See our pride we have for our mountain moving, earth shaking, superhero children. See them as we see them- a blessing that we can’t picture our lives without. Let’s all work to change the view of disabilities from one of pity to one of encouragement fueled by genuine moments of kindness.

If you have someone you would like to nominate to share their CP story, please send an email to childrenscerebralpalsymovement@gmail.com.